In January, the Spina Bifida Association (SBA) as part of the Disability & Rehabilitation Research Coalition (DRRC) responded to Proposed Changes to Disability Questions in the 2025 American Community Survey (ACS). SBA believed the proposed changes would undercount the population of people living with disabilities – reducing national disability prevalence estimates by 41%. The consequences of this false drop could impact programs and funding for services.

On February 6, 2024, the Census Bureau announced it received more than 12,000 public comments about the proposed changes. “Based on that feedback, we plan to retain the current ACS disability questions for collection year 2025. Along with our colleagues at Office of Management and Budget (OMB), National Center for Health Statistics (NCHS) and other statistical agencies, we will continue our work with stakeholders and the public to better understand data needs on disability and assess which, if any, revisions are needed across the federal statistical system to better address those needs.”  Robert L. Santos, Director, U.S. Census Bureau announced in an agency post.

The Potential Impact of the Proposed Changes

The proposed changes by the Census Bureau intended to redefine how disabilities are understood and measured. Advocacy groups raised concerns believing the proposed changes would lead to a reduction in the number of people identified as disabled. This significant decrease could have limited access to critical resources.

What Happens Next

• The Census Bureau will submit a final proposal for 2025 ACS content which will not include any changes to the existing disability questions.
• The Census Bureau wants to engage further on the disability topic.
• The Census Bureau, NCHS and OMB plan to convene a meeting with federal agency disability stakeholders, disability community representatives, data users, researchers, and disability advocates. The purpose will be to discuss data needs and data uses surrounding the topic of disability.

The Value of Public Engagement

SBA, along with other advocacy groups, is relieved that the proposed changes have been halted. “This is good news,” said Sara Struwe, SBA President and CEO. “I’m glad the Census Bureau has decided to reverse course. These survey changes had the potential to exclude many people with Spina Bifida from being counted as having a disability. When our community comes together and uses its collective power, there’s nothing we can’t accomplish.”